Telehealth poses challenges for patients, clinicians, families, and caregivers.
I am looking forward to seeing “Mr Walker,” a gregarious man with an engaging smile, whose cognitive functioning has gradually declined over the past 4 years. I click his name in our telehealth waiting room. The screen lights up and through a fuzzy computer connection I see him.
He looks around, bewildered. He hears my voice but cannot determine from where it is coming. He cannot focus on the computer screen in front of him and does not know what is required of him. A voice from the side says, “Dad there’s the doctor. Didn’t you want to ask him something?” The patient stares blankly and asks, “Where? I don't see him.” To that, I say cheerfully, “Hello Mr Walker,” and I get a glimpse of his familiar smile before he falls back into the chair in silence.
Early claims that telehealth is “virtually perfect”1 do not fit well with our experience with dementia patients. It has been more than 5 months since our team saw our dementia patients in-person. Some we will never see again, as they have succumbed to the coronavirus. Others survived the battle with the virus, but their brains were injured on the battlefield, and their dementia progressed to a more severe stage of deterioration. We have muddled through using telehealth—usually with video but sometimes by phone—but it is not the same as pre-COVID-19 care.
Our patients and their caregivers (mostly indigent, minorities, and immigrants) often do not have the bandwidth connections to achieve optimal video images. This is not an ideal situation for patients with disorders that impair their intellectual and social functioning. They cannot see or hear us very well, and they may become more confused by the video interface or retreat into the background. We cannot be sure if they are getting clinically worse or whether the technology is creating surplus deficits.
We have adjusted how we treat patients, and the jury is still out as to the impact of these changes. For example, during the peak of the pandemic, we weighed the infection risks of obtaining blood work or neuroimaging in labs or radiology centers. These risks seemed to outweigh the benefits. On the other hand, because COVID-19 can present atypically in dementia patients,2 we were more vigilant concerning changes in their behavior, function, or cognitive status, and encouraged patients to obtain in-person medical evaluations, perhaps sooner than under normal circumstances. Sometimes with telehealth we must forgo smaller things, even if they are important for good geriatric care. Thus, checking blood pressure sitting and standing, checking pulse rate and rhythm, measuring weight—none of it is done if family members do not have the equipment.
Like remotely educating schoolchildren, telehealth is better than nothing. Indeed, the parallels with schoolchildren are striking. It is estimated that 10% of individuals 65 years or older (about 5.6 million people) have dementia.3 Roughly two-thirds of individuals with dementia live in noninstitutional residences, and adult daughters and, to lesser extent sons, are the primary caregivers for nearly 7 of 10 people.3 One-quarter of these people receive some paid care, and this number rises to half in individuals with severe dementia.3 Increasingly more patients are participating in day programs that specialize in the care of individuals with dementia. Those with mild dementia can still benefit from senior centers.
The COVID-19 pandemic eviscerated the patients’ community support programs. Keeping people active in the day translates to calmer and more restful nights, and research suggests that exercise and mental stimulation may slow the course of these disorders.4 Two vulnerable populations have had to make difficult choices about interacting. Many home health aides come from communities especially hard hit by COVID-19. Most aides use public transportation that amplifies their risk, and at the beginning of the crisis, they did not have adequate personal protective equipment. Some decided not to go to work. Additionally, in-home nursing and physical therapy services were often discontinued. On the patient side, dementia patients with COVID-19 have twice the mortality rate of non-demented people.5 Families must often play a form of Russian Roulette: “Will the aide who comes today give our parent a fatal case of COVID-19?” Consequently, some family members voluntarily stay home to care for their loved ones. Others that had been forced to work from home or were laid-off opted to temporarily discontinue home care services. Much as COVID-19 taught parents that it is not easy to replicate the school experience, family caregivers learned that it is difficult to replace a home aide or day program, especially if they are facing the additional demands of telecommuting and school-age children learning at home.
What does this mean clinically? Early in the crises, close-knit family structures unwittingly spread the contagion. To protect their loved ones, caregivers faced the challenge of limiting personal contacts with children, grandchildren, friends, or other relatives. Outdoor activities had to be restricted as well. Thus, they do not go to parks, houses of worship, supermarkets, or restaurants. Commonly, patients complain of loneliness or too much time spent staring out the window or simply lying in bed. The lack of daytime activity results in disordered sleep cycles, and they become increasingly confused and agitated. Diminished stimulation also increases depression, psychotic symptoms, physical decline, and possibly cognitive decline. Others try to leave the house and must be forcibly restrained by caregivers. Adult children that brought their demented parent into their own homes found that the latter often exhibited increased turmoil in unfamiliar surroundings. Rules about confinement and masks, incomprehensible to the individual with dementia, induce anxiety and fear. A vicious cycle ensued in which overwhelmed caregivers become less tolerant of the behavioral symptoms of their loved ones; this, in turn, aggravates these symptoms. We have prescribed more medications for these psychiatric symptoms, not only to relieve the patient’s distress but also to relieve the caregiver’s burden.
Increased reliance on medications, however, even when used judiciously, generates concerns in caregivers and physicians. The US Food and Drug Administration’s black box warnings for most of these drugs (eg, antipsychotic agents) link them with higher mortality risks. In the pre-COVID-19 era, we utilized alternative behavioral approaches such as day programs, senior centers, or various recreational facilities; given those options, caregivers were often more receptive to non-pharmacological strategies. Lately, I find myself encouraging a modest return to public spaces—a walk to the park or around the block—but many caregivers resist, fearful that such excursions could risk exposure to contagion, especially when their loved ones refuse to wear masks.
The good news is that we have been sending fewer condolence cards. We hope that a second wave will not arise, and we await the reemergence of the support network so vital for our patients and caregivers. Before the pandemic, such networks were underappreciated and underfunded by legislators; now, we fear curtailment from prior levels of services as states and cities struggle to balance their budgets. Taking care of persons with dementia and their caregivers is 1 of the most socially interactive specialties in medicine, and we are eager to see them in-person again. But because our patients are high-risk, they are first out and last in for office visits.
So we plod on, honing our telehealth skills and maximizing its benefits. For instance, we have found that telehealth can unobtrusively bring together clinicians and students from various disciplines into the patient’s room, as well as provide “home visits” for trainees who rarely see where patients live.
For now, I turn my swivel chair toward the luminous high-pixilated LED screen, put on my wireless, noise-canceling headphones, and like an internet-age version of the bemused Dr Bernard Rieux in Camus’ The Plague: “I have no idea what’s awaiting me, or what will happen when this all ends. For the moment I know this: there are sick people and they need curing.”6 And expectantly, I ask, “Hello, Mr Walker, how are you?”
Dr Carl I. Cohen is State University of New York Distinguished Service Professor & Director of the Division of Geriatric Psychiatry at SUNY Downstate Medical Center. He is also the founding director of the Center of Excellence for Alzheimer’s Disease at SUNY Downstate Medical Center and the Geriatric Psychiatry Fellowship Program. The author receives support from the Health Services Research Administration Geriatrics Workforce Enhancement Program-COVID; Grant no. T1MHP39042.
1. George, J. Telehealth boom misses older adults. MedPage Today. August 4, 2020. Accessed 9/15/2020. https://www.medpagetoday.com/practicemanagement/telehealth/87901
2. Naarding P, Oude Vashar RC, Marijnissen RM. COVID-19: Clinical challenges in Dutch geriatric psychiatry. Am J Geriatr Psychiatry. 2020; 28(8):839-843.
3. Mather M, Scommegna P. The Demography of Dementia and Dementia Caregiving. Program and Policy Implications. Population Reference Bureau working paper 40. May 2020.
4. Jia RX, Liang JH, Xu Y, Wang YQ. Effects of physical activity and exercise on the cognitive function of patients with Alzheimer disease: a meta-analysis. BMC Geriatr. 2019;19(1):181. Published 2019 Jul 2.
5. Azarpazhooh MR, Amiri A, Morovatdar N, et al. Correlations between COVID-19 and burden of dementia: An ecological study and review of literature. J Neurol Sci.2020;416: 117013.
6. Camus A. The Plague. Vintage Books; 1991.